Wednesday, March 16, 2011

Catching up

Today Summer had her port-a-cath removed. As a refresher, that's the access port they placed in January for the daily administration of anesthesia while we were in Boston. Since they no longer need it, it was time to have it removed. Jason and I were glad to see it go - it was pretty disconcerting to feel this big lump under her skin every time we picked her up.

The surgery went well and was very quick. It was only about 35 minutes after they took her back before we got the page telling us they were finished and closing up. 30 minutes or so after that, we talked to the surgeon briefly, and we saw Summer about 20 minutes later. She was awake already and NOT happy.

I'm not sure if she was in pain or just having a bad anesthesia wake-up (they can vary widely in reaction), but she was furious. I'm talking all-out screaming, flailing around, temper-tantrum-of-your-nightmares kind of stuff that lasted for a good 30 minutes before she finally calmed down. It was the most intensely angry reaction she's had to anything so far - Jason and I were shocked - but once she calmed down, it was like a switch had been flipped. She was talking normally and politely, asking if she'd get to see the doctor again, like nothing had ever happened.

She hasn't seemed to be in much pain today - the oxycodone is working well for her. She'll be on that for a day or so, but should recover from this pretty quickly and should only have pain at the incision site.

After two weeks, I think we've fully adjusted to being home. We miss our Boston friends, but are glad to be back! We've had a great time catching up with family and friends, and getting back into our normal routine. Summer's been in a "mommy needs to do it, not daddy" mode for the past few days, and I'm guessing that's part of adjusting to me being at work during the day instead of home with her. Otherwise, she's been coping with all the changes amazingly well.

Summer has had one MRI since being back. It showed the cyst being smaller than the last scan Children's had on file, but that scan was outdated so it's hard to say what the real results are. We're waiting to hear from Dr MacDonald in Boston once she is able to review a copy since she has Summer's most recent scan. Assuming there's no change in cyst, it will probably be another 2 1/2 months before her next one.

She's still not exhibiting many side effects from radiation, which we are grateful for. I've heard reports from some of the other parents of major headaches and continued fatigue, but Summer doesn't seem to be experiencing any of that.

She has had some hair loss, which is mostly noticeable on her right temple where her hair is short from her December surgery. I pointed it out to Jason one day, and apparently it really freaked her out - she's been having meltdowns about it from time to time ever since. Jason and I have had to reassure her numerous times that it will grow back. Poor kid - we'll have to watch what we say around her about the medical stuff while she's in this sensitive stage.

One of the questions Jason and I get asked most is: So, did it work?

The answer is: We don't know, and we won't for some time - maybe years. The tumor is not expected to shrink in size at all, so we won't have any indication of the cells dying off. We'd know sooner if it didn't work because they'd see growth in the tumor mass, but Summer's tumor (the mass part) is so slow-growing that it might take a year to tell if there really has been growth or not.

Unfortunately, we won't ever really be certain that the radiation worked on the cyst. We'll know if it didn't work only if her shunt also fails and stops draining the cyst, which would result in it filling up again. But if there's no change in the cyst, it means that either the radiation worked or the shunt is still working.

I think that's about all I have to update you all on now, but I'll post again when we hear back from Boston - hopefully in the next couple of days.